My Endometriosis Story | Girl Talk Tuesday

I’ve been debating writing this post for a long time. I often talk about my battle with endometriosis, but I haven’t ever told my whole story. I was never sure if this was a blog post topic or if it was more of a YouTube video topic… Maybe it’s a bit of both? Either way, I think it’s time I tell my story since I just experienced yet another cyst just this past week. Also, because I’ve seen so many of you sweet girls comment that you’re living life with this nasty disease too. This post is to let you know, you are not alone!

A word of warning: I’m discussing my medical experience and giving details. If that’s not something you want to read about, keep it moving to another post.

Let’s back it up to a young and sprite Angela. I was a late bloomer and didn’t start my period until I was 15 years old. It was not long after that I began this monthly nightmarish cycle and the nasty cramps reared their ugly head. I would get cramps so gnarly I would be curled up in a ball on the floor sobbing. I remember one time they were so bad my mom almost took me to the ER. I have a fairly high pain tolerance, but these cramps would knock me off my feet.

It wasn’t long after I got my first period that I experienced my first ovarian cyst. I walked around bent over holding my right side for days before my mom forced me to go to the doctor. I was terrified at the thought of seeing a gynecologist. I was young, immature and incredibly freaked out at the thought of a doctor examining my private parts. My doctor quickly sent me on to the hospital for testing and that’s where the real nightmare began. I had no idea what I was in for and the experience scarred me for years. The nurse explained I needed an emergency ultrasound and in order to do so, I would have to get a catheter. I freaked out of my head. The bad part wasn’t the catheter going in, the bad part was it coming out. It was awful. I’d never experienced anything like that and it was all done just to say I had an ovarian cyst that ruptured and you can go home. It was because of this experience (plus feeling like I had been manhandled) that I refused to see a gynecologist for a long time.

After that, I experienced years of bad cramps and irregular, heavy periods that would sometimes last for 10-15 days at a time. I had all the signs of endometriosis, but I just thought I was another teenage girl with bad periods. I mean you hear that from all your high school girlfriends, right? We all would complain about our cramps and compare our flows, so you just think that you’re experience is no different that anyone else’s.

Let’s speed ahead. The summer after my 23rd birthday, I noticed some irregular swelling down there. I figured it was yet another yeast infection (I would get a yeast infection any time I took antibiotics). The swelling quickly increased though. I went to my mom and she took one look and said, you’re going to the gynecologist. I probably stamped my feet and yelled no way… But I knew she was right. So off I went. I had my gynecological exam as an adult, and it was no where near as bad as I had psyched myself up for. She determined that my swelling was due to a Bartholin’s Gland cyst. She then gave me my first ultrasound in many years and found a massive cyst on my left ovary. Due to the size of the ovarian cyst, she sent me along to a specialist. I was referred to Dr. Stephen Mooney in Akron and he remains my best medical experience to this day. Dr. Mooney examined me and said we need to operate soon, so we scheduled my first laparoscopy surgery for the ovarian cyst plus removal of the Bartholin’s Gland Cyst.

The Saturday night before surgery (it was scheduled for Monday morning) I began vomiting uncontrollably. Dr. Mooney told my mom that if she took me to the ER, there was nothing they could do for me because my surgery was already on the books. My abdominal pain was so severe that I didn’t care, I forced my mom to take me to the ER. They ran a couple of tests and said that the cyst had not ruptured but instead became so large that it twisted itself and laid up against my stomach causing the pain and vomiting. They sent me home to wait it out.

Monday morning rolled around and it was show time. During the surgery, they removed a total of 7 cysts. One the size of a baby’s head on my left ovary, multiple on my right ovary and cysts in various places like my fallopian tubes. Dr. Mooney was able to diagnose me with endometriosis because of the type of cysts, which he called “chocolate cysts”. He said I was basically a mess on the inside. The Bartholin’s Gland cyst was removed and packed with cotton. Because I had three incisions on my abdomen along with the huge incision from the Bartholin’s Gland cyst, I couldn’t walk. My dad had to carry me around the house the first two days at least.

When I went back for my post-op appointment, Dr. Mooney removed the packing from my Bartholin’s Gland Cyst and the nurse had to hold me down to the table… The area became badly infected and the packing was horrific to remove. I wasn’t out of the woods yet, I needed a high dose of antibiotics to clear that infection before I could return to work. I think I missed a total of 8-10 weeks throughout the course of this first round with endo.

Dr. Mooney put me on birth control after that first surgery, saying that due to the severity of my endometriosis, I really didn’t have a choice but to start it. If you want to learn more about my birth control history, read this post.

After that, I returned to normal. My periods were less painful and I had normal cycles for the first time in my life.

Speed ahead to two summers later. I started having symptoms of IBS. By this time, Matt and I were dating long distance. We traveled to the Hamptons and I got terribly ill while there. We took a helicopter from the Hamptons to New Jersey to then fly home to Ohio. I was so sick prior to getting on the helicopter that I took a Phenergen for the nausea and slept on Matt’s lap the whole helicopter ride. What a waste of a once in a lifetime trip. As soon as we landed in Ohio, my mom took me to the ER and they hooked me up to an IV with Morphine because I was having horrible upper right quadrant pain. After running a ton of tests, they ruled out gall bladder and everything else under the sun. They sent me home with a diagnosis of IBS. I was referred to a gastrointestinal specialist and started down that road.

The gastro doctor prescribed new meds and completely changed my diet. Nothing would give. The abdominal pain was relentless. Finally I went back to Dr. Mooney and he said it was time to do another laparoscopy.

Welcome to endometriosis surgery #2. This time Dr. Mooney found that my ovaries had grown attached to the wall of my back. He advised that my IBS was most likely due to the endometriosis and he was so right. After that surgery, my intestinal symptoms were basically gone.

I always stayed up on my appointments with Dr. Mooney. When I moved to LA in 2011, I was so upset to leave my favorite doctor behind.

Since being in LA, I’ve been to three doctors for my endometriosis. I’ve never found the level of care or experience that I had with him. When I was home in Ohio back in March, I went in to see him for a check-up. I wish he would magically move his practice to LA!

I’ve been off birth control since February of 2016. I have experienced a lot of my old symptoms of irregular periods and cramping. Dr. Mooney is under the impression that another laparoscopy will be in my near future, and when/if that does happen, you better believe he’ll be doing my surgery. I have done more hours of research than any one person should, on the topic of endometriosis. I’ve tried so many supplements and life changes. I try my best to avoid soy, which is claimed to be a big culprit of the disease. I have been on folic acid for many years. But most recently, I started a supplement called MacaHarmony, which was referred to me by a woman working in the supplements department at Whole Foods. After researching the supplement, I started it and within the first month I had my first regular period in more months than I could remember.

If you think you are suffering from endometriosis, first off… I’m sorry. I know your pain and I know how helpless you can feel. Something I think a lot of people don’t realize, just because your mom didn’t have it doesn’t mean you don’t have it. My mom never had endometriosis or surgeries like this. My aunt and cousin both had it, but that was the only connection to the disease I had.

Do your research. Listen to your body. Find a great doctor. If you don’t feel comfortable with the doctor your seeing or the answers you’re getting, seek a second opinion.

One resource I would highly recommend for my endo sisters is Nancy’s Nook on Facebook. It’s a fantastic group of women who support each other through this journey.

My endometriosis journey is unique. We all have different symptoms, different treatments that are needed and different roads to recovery. I’m not a doctor and my story should not be taken as advice or direction for your treatment. Seek medical attention before taking any supplements.

Leave a comment below if you too have suffered from this nasty disease that too many of us women have. Please share what has worked for you and feel free to also share your journey. ❤️

45 Comments

Marina

July 18, 2017 / 9:06 PM

I’m so glad you wrote this post. I’ve known you have endometriosis but just hearing your journey paints a different picture in my head. I was never familiar with the disease until you said you suffer from it so I looked it up to see what it was. I can’t imagine. Praying that you have as little complications during your life. I’m from Ohio too! 20 minutes north of Akron actually lol but living here in cali too. What a bummer that your favorite dr is across the country. What a strong person to go through all this. Praying for you girl. The Lord won’t give you anything you can’t handle. Isaiah 41:10 <3

Sorry you are experiencing this and hope things become less complicated. I hope any near future surgeries you may have go well and can help heal you more! I wish your doctor could move his practice to LA. It would be so convenient. Thanks for sharing your journey with us. I know it can’t be easy sharing private personal matters with strangers. We all love you and support you! We’re a family! I wish I knew my family medical history. I was adopted as a baby and no real medical info about my family on my birth records and such. So I really don’t know what kind of family medical issues I may or may not get in my life. So far been blessed with healthy life, but 10, 20, or so yrs from now I don’t know what will happen. I try to maintain a healthy diet and lifestyle. I am appreciative and grateful to have a healthy life. I wish everyone struggling could have peace and pain they suffer would disappear forever! You’re Hello Gorgeous Family is always here for you! We love you and wishing you the best! ❤️

hi Angela , thank you for sharing your story, i have endometriosis myself, i had my period for the first time i was 9 years old ( i know crazy !!) so i was still a child and it was very hard for me because i could not really talk about it with my friends
the first years the pain was not too bad but around 12 i started to have horrible cramps in my low tummy and back, but the doctors where i lived (in france in the countryside) didnt really know endometriosis, it was very rare to hear about it , and also i was so young they didnt think i could have this illness anyway so they first send me to hospital to have different (painful) exams mostly in my stomach because they though the problem came from my stomach and not my uterus (it was “normal” to be in pain while having my period”)
then because they could not find why i was so sick, they told my parents it was probably all “in my head” that i was a “sensitive” child, and they told my parents to be more strict with me and send me to school even when i was in pain, it obviously didnt work so the doctor sent me to a psychiatric hospital (i was 13) he said i was depressed (of course i was, i was in horrible pain , bleeding a lot, losing weight etc) after a few days my parents decided to take me home and kept trying to find a solution (they ve been amazing, and very supportive) my mum finally found a doctor, who s a specialist for endometriosis in europe,he told me about endometriosis (i was 17 at that time and heard for the first time about this illness !!!) i had then 3 surgeries where they found out i had endometriois behind my uterus , in my stomach, intestines, i cant even find the words to explain i felt ! the operations where so painful, and i was really shocked to hear about endometriosis and scared to learn that i might not being able to have children but for the first time someone told me that “it wasnt in my head” the pain was real, and i was ill not crazy !
since the surgeries, i ve been on hormonal treatments, (injections every 3months for 5 years) and now im on birth control non stop (so i dont have my period)
i still have cramps once in a while (mostly when im tired) but its nothing compared to what it was before
unfortunely because the doctors took so many years to find out what the problem was, and because of all the traumatic moments i had, my back is now very painful i have an herniated disc , the doctor say its problably because ive been so tense and stressed for so many years

anyway, sorry for the long message lol i just wanted to share my story because i think its so important to talk about it, its been a real nightmare for me when i was younger because nobody would talk about endometriosis, and i had to suffer in silence, and i dont want it to happen to my niece, future child, friends

also i think the important thing is to listen to your body, for many years i pushed myself, worked hard, didnt want to say when i was in pain, but now im ok saying ” i have endometriosis” im in pain, i need to sit down or rest more that other people

thank you again Angela , it really means a lot to me and im sure to other endo sisters, to read your message and see that we re not alone !

I am so glad that your wrote this and shared your story. For a while when I was younger, because I’m one of those people who google all my symptoms lol, I thought I had endometriosis. I don’t which makes me so lucky, but I know some people who do. When I was at BlogHer this year MEinEndo was there and I sat and discussed more about endometriosis with them since I had heard about it here and there from following you! I just actually passed on this blog post to them (I hope that’s ok) because I think it’s so good to spread the word about this so that more women who have this feel supported and know what they can do to get help for it. I love your girl talk Tuesdays!
Xo, Nikki | http://www.thefashionableaccountant.com

Thank you for sharing your story and putting yourself out there. I’m going to be that one annoying person and suggest a plant based diet. Perhaps you have already tried it. Check out the book One Part Plant if the idea seems daunting. You can do this. <3

Wow. This was a really informative article. Thanks for sharing your pain, struggles, and optimism!

I was diagnosed with PCOS at the age of 15 (also late bloomer) and I am 33 years old now. I think PCOS is endometriosis’ cousin so to speak! I remember the doctor telling me that if I ever wanted to have children I would need hormone therapy and fertility treatments. Well, today I am currently pregnant with my 4th child! I have 3 healthy and amazing children ages 13,10,& 2. I really wanted to share this with anyone who is possibly struggling with this too. There is HOPE and a whole lotta faith guys!! I have never in my life had any of the recommended or suggested treatments! These 4 miracles are true gifts from God!!!

Thank you so much for sharing your story. Endometriosis doesn’t get the recognition it deserves. A lot of times I just hear, “You just have bad cramps. Get over it.” I, too, have a pretty decent pain tolerance (I shocked my dentist one time because I wasn’t feeling any pain when a tooth was in desperate need of a root canal.). But when those cycles occur, man can they bring me to my knees. I had my first surgery at 17 (almost didn’t make it to junior prom) after collapsing at school after play practice with a twisted cyst. Little did I know there would be 13 more surgeries in my future. One of which was to put my uterus back in place since the endometriosis had pulled it down. I would some times sit and dream of all the vacations I could be taking or house I could live in with everything I have paid in medical bills, but I guess this is my journey. I am grateful I don’t have to walk it alone, though, with many other women like you coming out and sharing yours. After my recent trip to my doctor, I know another one is in my future. But “this too shall pass,” right? On a happy note, I do have a beautiful 2-year-old baby boy that resulted after a “clean out” surgery after a miscarriage. So, for that, I am grateful. Thank you for sharing your journey, and making me feel less alone.

Thanks for being so vulnerable and sharing your life, Angela! I love reading your blog and though I don’t suffer from endometriosis, I can relate with your pain. I think it’s so powerful to see an influencer like you talking about your struggles in life and not just the glamourous, happy parts. Praying for you and all the other Gorgeous girls in pain.

Angela, As you already know I know how horrific the pain and symptoms of endometriosis really are. After having multiple laparoscopic procedures and a total hysterectomy at age 27 I can totally understand what you’ve been through. Years of heavy bleeding, severe abdominal pain, nausea, vomiting, and headaches is very mentally and physically draining to say the least. After I had my hysterectomy I thought I was out of the woods when I was diagnosed with Interstitial Cystits which has been absolutely horrific. I am so sorry you’ve had to go through all the pain and suffering. Btw, Dr. Mooney really is a great doctor! Love you!

Thank you so much for your story. I also have endometriosis and went through hell and back when I was a teenager. I had laparoscopic procedure done when I was 19. I was in college and ended up having to drop out and come home because I was always in so much pain and in and out of the hospital. I was on birth control for a long time which helped quite a bit. But within the past year I went off birth control due to getting migraines. A lot of the pain I had before has come back. Its such a process going through all this.

I hope everything goes well with your future surgeries. Laparoscopic procedure’s are horrible, mostly just the pain from the surgery. I wish you all the best in the future 🙂

Im sorry to hear about your endometriosis. Must be horrible! As a migraine patient I know a little about pain.
Luckily I’ve never experienced anything like your story, but a friend of mine did. She was helped by accupuncture, Maybe that can mean something. I dont know what you tried already, but its worth mentioning. Anyway I hope things improve somehow and you will get pregnant in the very near future! Xxx

I’m so sorry your going through this. I can relate to it. My junior year of highschool I started having cramps and I went to the ER and they thought it could be my lymph nodes infected. So the pain went away for a little bit but then it came back and my primary said she thought i might have endometriosis. I only had one person in my family supporting me, it was very bad. So my senior year came and all the sudden the cramping came out of nowhere. I told my grandfather it’s back and we then heard about going to the University of Maryland woman’s clinic because we saw another gynecologist and she wanted to start me on the deprovera shots and I said “we don’t know for sure and I just want to be sure”. So we went to the University of Maryland clinic and they put me on birth control and well that didn’t give me much relief. I was leaving classes early because I couldn’t sit up because of the cramps, I would go to the nurses office and just cry and lay down in a ball in pain. It was so embarrassing and hard because my aunt had been through it and my grandpa was retired so he was taking me to the ER or the doctors appointment. Then when we went to the University of Maryland women’s clinic they said immediately it sounds like endometriosis. And started me on birth control and it didn’t do anything I would still cramp during my periods even if they didn’t come. I was scared because there was no female support with my family and they went in lapriscopic and found nothing. And it was my first surgery and my grandpa was the only one there. I was scared because they didn’t find it, but when I went back to the clinic the doctor said “you still shouldn’t be in this much pain after surgery.” It’s there we just didn’t find it so you have to go back on the birth control. Well this was February when this happened. And in March I met Dr.Morozov and he had done a procedure where they cut the nerves of your uterus and it relieves the pain. My grandfather thought I had lost my mind for being willing to do this surgery. It was the end of my senior year, prom and graduation meant nothing at all me because I didn’t feel good. I went to class but we were able to get me to go only 1/2 day the second half of my senior year so it made it easier especially on the days I was cramping really bad. When it came time for the surgery my insurance didn’t want to cover it because they had went in once and never found it. So they sent it to a health board and I was calling them every time I was hurting or vomitting from the pain. I called them to update them. It was October 2009 and I lost my grandfather to cancer, and I got approval for the surgery finally but I had to lean on the people that doubted me the most. It was a very lonely feeling. He found the endometriosis it was on my rectum and uterus. It was so scary because I couldn’t go back to work right away I just had to recover and it wasn’t easy. So when I went back to see them I had to be put back on birth control and stay on the cymbalta because it helps the endometriosis. You go now into 2013 I’ve had 3 back surgeries and the cramping started and I was having trouble with my bladder emptying. So I saw the doctor who did the surgery and he said “you have a shy bladder.” And he said we need to put in an IUD because birth control isn’t the smartest move. Due to medications and other problems going on.
They weren’t able to put the IUD in because I freaked out during the process, so I’ve went without any treatment since 2009. Fast forward to now and well I have had 7 back surgeries and recently diagnosed with Lupus. So when they did an MRI of my back a right ovarian cyst showed up and my neurosurgeon said you need to be seen by a gynecologist for that. So I went back to the doctor who cut the nerves of my uterus and he was leaving the practice and he didn’t see the point in me seeing him since he was leaving. So the manager of the practice asked a gynecologist in the office if they would take on the case. Her first words were “you’ve had no treatment since 2009!” And I said nope. She said her concern with the cyst was it could be an endometrioma and she explained it but I spaced out. Just the thought of it being back scares me. Anyways she ordered an ultrasound and it said “an endometrioma cannot be ruled out”. Do a follow up ultrasound in 2months and that is the plan. She also prescribed ibprofuen 800mg to take when I’m cramping and it has helped sometimes. It’s so bad I just want a heating pad.(that helps too) my periods are very heavy so bad that I go through underwear twice a day and I’m changing my pads every hour. It’s bad. So she mentioned that I had two options to either 1) get pregnant now or 2) go on the IUD or the deprovera shot.
The problem is with the deprovera shot because of my back issues she has a concern of the bone growth and causing issues with my back. And with the IUD because I cath myself at least 4-6 times a day. So there is the problem and I can’t take the pill because of the Lupus, headaches, and all the medicine I’m on.
She also told me that I have 2-5 years to get pregnant and I should do it sooner than later.
That’s my story. I also read a really great book for endometriosis that I got on amazon. If you want the title let me know. It’s really great especially for new diagnosed women. The one thing that has been the struggle is I haven’t had the support like most girls have. But I’ve gotten through it so far.

Sorry you’ve had to go through this. I had a dermoid cyst on my left ovary when I was 14. Like you, my mom had to force me to go to the gynecologist (after going to the er). After they removed the dermoide cyst (they were able to piece back together my left ovary, so I didn’t lose it, but the cyst did have teeth and hair it in) I still had pian, and went to few different gynecologist—-till I found the one I have now. She ended finding that I had endometriosis (there was even some near my belly button, so I started having blood come from it, so strange, they assumed it happen because of laparoscopic surgeries I had). After treating it with different shots (that put me in a menopause stage), it got a bit better, but she thought since I still had issues it might be stomach related. So, I went to a gastrologist and had my gallbladder removed and was told I have IBS. I still have problems with pain in sides and can tell when it’s a cyst (which I haven’t had too many recently, thank goodness). I’ve been on birth control since I had the cyst removed, at 14 (in so form) and now have an IUD. I’m so scared to not take birth control and my problems getting worse, but I know at some point I’ll want kids (I’m in my mid twenties now). I’m glad you shared this with your readers and I’m glad you shared about going off birth control in post. It really has helped me feel like I’m not alone. I was so scared I’d never find a good doctor, who believed I was in pain, but I did. I’m glad you found a good doctor, but I’m sorry he is so far from you now. I hope you don’t have any more problems. I truly sympathize with you and know how horrible the pain is. I’ll be praying for you and thanks again. You’re such an inspirational person to me. Take care and God bless you!❤️❤️

So sorry you have to go through this! I didn’t know the extent of what this disease can do to someone. I can’t imagine the pain with some of the stuff you described. How awful! The only thing I can relate to is the IBS issues. I have had stomach issues basically my whole life. My stomach will bloat so bad (among other problems) that it looks like I’m pregnant–like 7 months pregnant! Sending prayers that this gets better for you! xoxo

Love your vulnerability and that you bared your soul about something so painful and frustrating, Angela. I had my first symptoms and surgery because of endometriosis when I was 23. I have been on bc ever since and I am now 30, single, but dream of having kids one day. I pray that somehow, some way the Lord allows for that to happen when the time comes, but honestly getting off birth control and trying to have kids is a season I fear because I am so afraid I won’t be able to have any because of this disease. I did feel hopeful and less worried, however, as I read your post and the comments of so many others, so thank you again for being willing to share your story even while it is still unfolding.

Thank you for sharing your story. I would have been sooo terrified going through that as a 15 year old. I had terrible cramps and irregular periods pretty much as soon as I started. I ended up being put on birth control to fix that. But turns out it was just a band aid for the fact that I had a really thick lining and was forming fibroids. It all finally came to a head a couple of years ago when I had to go off birth control and my periods went completely out of control and I had to get ultrasounds and have a couple of procedures to remove the fibroids. Up until that point the bleeding had been sooo bad that I became extremely anemic. I was losing my hair and it had thinned out so bad that I had to cut my hair to the tops of my shoulders. The final procedure to get rid of my fibroids, was an outpatient surgery where I had to be put to sleep. Everything has been going pretty well since than, I have to get the depo shot now to suppress the formation of more fibroids. My hair has thickened back up thanks to a combo of hair skin and nail supplements and prenatal vitamins. I take the ones without iron because I’m no longer anemic. During the beginning process of figuring out what the heck was going on endometriosis was mentioned as a possibility before they fully did all the ultrasounds and that scared the heck out of me because anyone that has talked about their struggles in dealing with it have a lot of painful struggles and I didn’t know how I would deal with that.

Thank you for sharing your story, sister. I suffered from endo symptoms since I was 15 as well, but wasn’t diagnosed until 2014. Since I had so many issues and was sick 24/7, I had my gallbladder and appendix removed when I was 20 (they thought that plus Gastroparesis was what was causing all the issues). Even after they removed that and I was on a strict diet, I was still having issues and I began to think I was crazy. After I got married, I began seeing my gyno since I was having painful sex, but she kept telling me I did not have endo or cysts because she “couldn’t feel it when she pressed on my belly.” She was trying to get me on some chemo drug to help with symptoms, and she refused to explore more into whether or not I had endo. Flash forward to my senior semester in college where I started having such bad pain that I went to the doctor thinking I had kidney stones. They did an ultrasound and lo and behold, ovarian cysts. I was livid since my doc didn’t believe I had any. Stupidly, I decided to have her do my surgery to remove the cyst as well as look for endo. During surgery, the cyst ruptured as she was removing it, and she discovered endo all over my walls as well as “floating sacs” that were just in my abdominal area unattached. Needless to say, the surgery helped ease pain for a bit, but the symptoms came back. I hate it. I’m constantly worried about getting sick when I’m out and about (girl, I can’t even tell you how many times I’ve had diarrhea in public restrooms lol!). The best part though, is that I have such a sweet, loving, understanding, and supportive hubby who has been by my side through it all (Matt seems like he is the same as well, so we’re both pretty blessed with rad hubbies :). Anyways, we haven’t tried to conceive yet, but my big fear is that we will struggle to get pregnant. :/
Whew, anyways, I didn’t mean to write a whole stinking novel lol, but I just wanted to say thank you for being vulnerable, candid, and outspoken about your experience. I know it’s not easy. But I’m so glad more people are talking about it now. THANK YOU. <3

Hi Angela ! I’m Oceane from France. We already spoke together many times. I’m glad you posted this because it helped me to share my story. Today I need your help or the advices from the gorgeous family … I’m 22 and had a surgery for my shoulder and I have heart issues (not a big deal, but I had to take pills every day). At this moment I’m very sad and I’m loosing all faith in me. I’m given up … I know you are a positive person. How did you manage to stay strong with your endometriosis ? I’m so bored to have such pain in my arm and see it with no muscles at all … Thks you, Love u ❤

I went through two different doctors until my mom took me to the obstetrician gynocologist that saved her and my brothers life. He knew immediately what was wrong with me. I was one of the ones who caught it early, I had laposcopy at 15 and have been managing it ever since.

Thank you for sharing your story! My endo has left me tubeless. I lost both tubes last year, the first while having cysts removed from my ovaries. I didn’t know that I had endo at the time of the surgery but woke up missing my left tube. At first they couldn’t even find it because the endo had wrapped my tube around my ovary and it was tucked behind my uterus. 6 months later I lost my second. I was mad at God for about two hours (I know that isn’t a lot of time but I get over things quickly) but then realized that he didn’t “do” this to me… it just happened. I knew I could choose to be bitter or to choose joy. I know that bitterness doesn’t breed anything positive, so I chose Joy. At the time we were about to start trying for our first baby… those plans were obviously squashed… but one year after the loss of my first tube, we started the ivf process and I am now almost 16 weeks pregnant with our first little girl!! My endo turned into infertility but with lots of prayer and a little science, we are expecting and have 5 more frozen embryos waiting for us!

I was diagnosed 3 years ago after years of excruciating pain, multiple trips to ER and passing out several times from the pain.

I read that most women are misdiagnosed or their pain ignored for years before finally getting a correct diagnosis so I am so glad that you are sharing your story. I hope it will encourage women to keep pressing for answers and to find a doctor they trust.

My gyno put me on Visanne (Dienogest) was a life-saver for me. I started to feel normal again and it works to slow the progression of the disease.

Having your pain trivialized over and over again or normalizing it as regular period pain is absolutely brutal. I feel for any woman who battles with disease for so many reasons!

I finally had a chance to sit and read your story and whew!! I’m sorry you’ve dealt with all of that! I know how it can just about take over and rule your life. I have endometriosis and also adenomyosis (also called uterine endometriosis).

I started my period when I was 11 years old and it was excruciating from day one – each month spending at least 2-3 days in bed in agonizing pain and vomiting repeatedly and oddly at some point my legs would start to feel weird and go kind of numb (of course the numbness never spread to my cramps 🙂

I’ve tried Vicodin, Percocet, Norco, muscle relaxers, etc etc – nothing even touched the pain even when I managed to keep it down and not throw it up.

My doctor prescribed seasonale continuous birth control and that made a huge difference. I still had pain but nothing near what it was since I wasn’t taking a “break week” to get my period. But after I had my second son I developed a blood clot and had to spend 5 days in the ICU so any form or hormonal birth control was out of the question do to the increased risk for another clot.

Periods got heavier and heavier, pain got worse and worse, to the point of blacking out and then came ovarian cysts, ugh. I could go on and on but to make a long story short(ish) 😉 I just wanted to say thank you for sharing your story. It makes a difference knowing that there are others out there who actually understand what it’s like. Praying for healing, pain relief, wise doctors and good health for you!

Hey Angela! Thanks for sharing this story! I am not a frequent reader of blogs but do every once in a while. It’s amazing to see how God’s grace has played out through this story. I hope that you continue to always trust God and know that he has a plan through all the hard things in life that we go through.
Also, here’s a story of faith to encourage you:
A family at our church just went through the loss of a father because of cancer. I could not be more amazed at their display of faith through it all. Although what was going on in his body seemed so hopeles, they remained faithful to God and His word. Through this trial they have encouraged so many that God is so much bigger than what is going on in our lives and he has a plan through it all. We have a hope that through Jesus Christ, we now get to be with him one day 🙂 sometimes we don’t understand why things happen (especially to the most joyful, loving, faithful people), but God is always their and is sovereign over all things.

Thank you so much for sharing your story. I don’t have endometriosis, but I do have Polycystic Ovarian Syndrome, that has many of the same symptoms. I also have a bicornuate uterus, also known as a heart shaped uterus (which sounds cute – it is NOT). I didn’t learn any of this until I was 24. Before that doctors threw pain pills and birth control at the symptoms. After high school I stopped going to the doctor. My symptoms increased over time: extreme pain, hot flashes, heavy bleeding lasting up to 2+ weeks at a time, some times skipping a month all together, acne, weight gain, etc. At first I was terrified to go back to the doctor because I had made the mistake of googling my symptoms. Once I was fed up enough to go to the doctor it took a while to find a doctor that would take my symptoms seriously. I was told everything from, “It can’t be all that bad” to “You’re young, your body has plenty of time”. I then finally found a doctor that took my symptoms and my concerns seriously. My husband and I desperately wanted to start a family. We went through fertility treatments, took a break, finally got pregnant to miscarry in the 2nd trimester, to get pregnant the next year for our daughter to be born still all because the shape of my uterus causes me to have and incompetent cervix when pregnant. Doctors have talked about uterine reconstructive surgery before trying again. For now we are focusing on the rest of our lives without children. Through all of this, even though I logically knew I wasn’t the only one, it felt lonely. So again, thank you so much for sharing your story.

Thanks for sharing your story. I don’t know where you live in California but I have THEE best gynecologist in Santa Clarita which is right outside of LA. I actually just moved to Washington state and fly back twice a year to see him. He is the most kind gentle dr and really listens to you. If your still searching for a DR. Give him a try maybe worth the trip.

Hi. I just listened to your episode on Jamie Ivey’s podcast. Thanks for sharing this. I was dx with Endo in May 2003. I had always had painful cycles but never realized what was the cause. I had my first surgery in June 2003 and it was amazing, it really helped and I was pain free and REGULAR for the first time ever (I was 30 at the time). Birth Control was not a great option for me as a maintainer bc it really did bad things to my body. In June 2004 I knew the endo was back. Instead of going back for a regular laprpscopy where they scrape it off, i somehow connected with a very specialized surgeon in Atlanta.(Dr Ken Sinervo) at the time he was one of two specialists in the country who CUT out the endo, at it’s root, so it didn’t come back. Previous to this, my own OB GYN who I loved, told me I had one of the worst cases ever and had less than 20 percent chance of ever having children. Anyway, fast forward to today, I have not one, but two healthy miracle children and not a trace of endo since my surgery in 2004 in Atlanta. Keep up the good word of spreading the word of this terrible disease and best of luck to you on your journey!! xoxo

Thank you so much for sharing your story ❤️ it’s so important for people to be more transparent and real. I just wanted to suggest something… and I’m sure you get a lot of suggestions… but I read you have been taking folic acid. I just wanted to recommend looking into folate if you haven’t already. Folate is the non synthetic version of folic acid. It sounds like a little change but makes a big difference. I would also suggest looking into the MTHFR gene.

so glad you found some relief ❤️

If you want to pick my brain, don’t hesitate to reach out. I’m still on my learning journey.

I’ve never been diagnosed with endometriosis but I can totally relate to your pain with ovarian cysts. Those sneaky little things have sure given my life quite the chaos over the last decade. I was first diagnosed with ovarian cysts when I was 15 years old. My gynecologist wanted to put me on birth control then, but I wasn’t comfortable going on. It took many ruptured cysts and 2 hospitalizations for me to decide that going on the pill might be beneficial for me, but by then it was a little too late. Fast forward about 4 years and i had just moved away from home to start my freshman year in college. I had just turned 18 about 3 days before and I was going through sorority recruitment when I woke up in the middle of the night in excruciating pain. It felt as if my insides were being twisted by the Hulk. I was rushed to the ER at 3 am and ended up in emergency surgery later that day. Turned out that I had another cyst on my ovary that got to be the size of an eggplant and it twisted cutting off all blood supply to my left ovary. It was an extremely dangerous surgery because at any point the cyst could have ruptured at any point during the surgery. Being left with only my right ovary and being so young I wasn’t really given the choice to not go on birth control.

I’ve recently started using essential oils and have had a lot of success with it. One specific oil that I use to help with cramps is called Clary Calm and it is by DoTerra. I absolutely love it and use it every time I’m on my period. I’ve suggested it to other family and friends and they have also loved using it too!

Heartbreaking comments but at the same time, a lack of knowledge I think is keeping many women from finding a real good answer.

I can’t speak from the female standpoint and I just happened across this forum by searching and browsing around Pinterest.

Girls, because of a severe yeast problem that took me years to figure out (male) I had terrible hormone imbalance and didn’t know it.

After I cured the _____ yeast, I felt better but not the way I wanted to.

So, I researched more, which I’ve been doing for many years, and got the feeling I needed to try bioidentical hormones.

To make a long story shorter, they worked like a charm, even helping me to regrow some hair.

A lot more research and I found that some doctors, usually naturopaths are prescribing bioidentical progesterone (which I used) to help balance hormones.

I can’t verify it but after my own experience and all the natural research info I’ve read on the subject, I am convinced that natural progesterone can help with many female reproductive issues.

Notice I said natural because the stuff MDs prescribe is not natural. That’s why it sometimes has bad side effects. An example is birth control and breast cancer.

A maverick MD was actually the first serious researcher on the subject and he did a lot of experimentation with progesterone. The problem here is that most MDs know little about this research. Like everyone else, they are busy and don’t have time to read about every study that takes place.

Also, since yeast infections often result in hormone imbalance, curing yeast has to be done before the hormones will balance properly. You cannot cure a yeast infection with antibiotics – they cause the problem most of the time.

You may think you cure it because antibiotics may ease some physical symptoms for a while, but it just comes back again and it all starts in the digestive system, when antibiotics kill good and bad pathogens, allowing the bad to slowly take over.

Birth control can also cause chronic yeast problems. Anything that upsets natural hormone balance has the potential to give you all kinds of reproductive problems because those areas are more affected than other areas when there is hormone imbalance.

Also, xenoestrogens have become a major cause of hormone imbalance too. That’s why most girls reach puberty and develop physically faster than a couple decades ago and of course that early development sometime brings the types of problems I see on this forum.

I also had my wife take bioidentical progesterone not long after we met because I thought I recognized some of her symptoms.

It worked for her and of course it may not work for everyone, but for many people, I believe it’s a Godsend.

Also, my research always brings up the info the these kinds of problems happen mainly in the industrialized countries.

I also suggested to a lady I know who had a hysterectomy and had tried everything else trying to retain her sanity.

The progesterone did help her.

One final note. The stuff doctors prescribe, they sometimes refer to as progesterone but it isn’t. It’s a synthetic so it can’t do what you want it to.

The natural stuff can’t be patented, so the medical profession doesn’t pay much attention to it, plus the fact that most MDs don’t take up further study of hormones after their medical education.

The discovery of the yeast/antibiotic connection was actually discovered by another maverick MD but generally yeast was something the medical profession wouldn’t acknowledge till lately and they still don’t realize how serious a problem it can become.

I just had my second laparoscopy with a Dr who truly cares and specializes in laparoscopy. She removed all my endometriosis instead of burning it. My first laparoscopy the dr burned it which makes it grow back. So this time around the dr removed it and she implanted mirena which I’m hopeful will help me. She said it’s not estrogen based which makes the endo grow. This dr I see is in UCR so since you live in the LA area maybe she can help you as well.